Discussions By Condition: Sleep disorders

Hypersomnia or something else??

Posted In: Sleep disorders 5 Replies
  • Posted By: HawaiianJ
  • March 12, 2008
  • 00:32 AM

Hi. I am a 22 yr old female and have serious issues with my sleep. I am always sleepy! I sleep great at night and great during the day! I fall alseep at the wheel and just sitting around. If I start to just zone out I fall asleep. It is not that serious to be narcolepsy. I did go and get a sleep study and nap study done and they decided idiopatic hypersomnia.

I think it may be a bit different. I just got the results of that today and decided to search the net a bit about it. I came across some other conditions such as Klein-Levins. I just wonder?

I didn't tell my doctor because I didn't think the relavance but I have a scar on my forehead from passing out at work. I just blacked out. The doctors then said there was no cause and that it was just that. I tend to also get really dizzy and feel that blacking out effect in the shower so i just sit down or lay down in there.

But with Klein-levins they talk about complusive eating, which i don't think i have. I do eat quite a bit for my size. I am 5'3 about 130 and I keep up with my husband 5'7 160ish. But that isn't that weird i know plenty of ppl that do that!

I have really REALISTIC dreams. So real that i have to ask my husband if it really happened??

I just wonder if any of you wonderful people have any suggestions on what might be going on?

Thanks a ton!

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5 Replies:

  • Your situation sounds very similar to mine a few years ago; it has since leveled off into persistant fatigue and some oversleeping, but the severe problems lasted for several years in my late 20s. I too was finally diagnosed with idiopathic hypersomnia after a sleep study disproved the preliminary narcolepsy diagnosis. (I actually did have compulsive eating though and went from 105 lb. to 170 lb.) You are a bit old to have Klein-Levin syndrome, which usually affects adolescents. It also involves, per the KLS foundation website, remissions between recurring episodes "during which time all normal daily activities stop. Individuals are not able to attend school, work or care for themselves. Most are bedridden, tired and uncommunicative even when awake." How long have you had the sleep disorder? If the fainting persists, you should ask the doctor in case there's another medical reason. They gave me an MRI to rule out MS or a brain tumor (not to be scary--it's probably not that!--just a reason to mention it to the doctor). When I fell asleep, there was usually some warning, so I eventually learned to avoid pointy objects, heights, and other dangerous situations where falling over asleep could result in major injury. I stopped driving and became dependent on others to take me to work and on errands, which was horrible but necessary. You really must stop driving. Even if you're not worried about your own safety, think of the people you may inadvertently kill. I'm not being judgemental; I continued driving well past the point of safety with rationalizations like "But there's no public transportation where I live" and "I haven't had an accident *yet*."Best of luck with this condition. It's hard to accept a diagnosis whose very name is a partial revelation that the doctor really doesn't know what's going on.
    Anonymous 42789 Replies Flag this Response
  • Responding to the 22 yr old with Ideopathic Hypersomnia:Have you looked into the possibility of having Non-Rem Narcolepsy?I too have a baffling sleep disorder. I get irresistible sleep attacks daily, had a sleep study, and got the same diagnosis you got. Hang in there. I drank beer for a while to try to break the cycle of sleepiness. It helped for a while. Very hard to live like this, I think doctors dismiss us as having psychological symptoms. This is physical.Thanks for sharing (female in Michigan).
    Anonymous 42789 Replies Flag this Response
  • Your condition sounds very close to mine. The one difference is that I don't fall asleep while I am doing an activity, like driving, but I will completely fall asleep at work for instance, if its a slow day and I'm just staring at the screen. I am not 35, just got married 2 years ago and have a 1 year old baby girl which prompted me to get checked out by the Dr. I have had this disorder my whole life but never did anything about it since I was single with no kids; I would just nap whenever I wanted, which was ALOT. I remember when I was 18 and in Marine Corps boot camp (yes, I served a successful 4 years with this disorder somehow, lol), I would get in trouble repeatedly for falling asleep in any classes we had. I would try to stay awake as hard as I could then the next thing I know one of my squad leaders is smacking me in the back of the head!So I did sleep study about 10 months ago and passed with flying colors! I slept for the entire 8 available hours at night, then fell asleep within 3 minutes for each nap they told me to take. I was proscribed Provigil, which is a named brand and took a bit of work to get my insurance to cover it. Even with the coverage it still costs me $60 a month as my share of the payment. But it is SOOO worth it! Life is so much different and better now! The only thing it did was take away the urge to nap during the day. No other side effect that I can tell at all. If I get 8+ hours of sleep at night and take my Provigil in the morning, I will just stay normal all day without that driving need to sleep. I still can take a nap if I choose to (which I LOVE to sleep, so thats good), but I just don't feel that crushing need to sleep anymore! Its really an amazing thing to go through 34+ years like this and then not have to feel like that again, hopefully you can talk to your Dr about this drug and give it a try.As for the blackouts, I don't think that has to do with a sleep disorder. This sounds a bit like what my wife went through during pregnancy and it ended up being a iron deficiency. So there is probably another issue that is causing that weakness or blackouts.Good luck!
    Anonymous 42789 Replies
    • September 20, 2009
    • 10:21 PM
    • 0
    Flag this Response
  • Your condition sounds very close to mine. The one difference is that I don't fall asleep while I am doing an activity, like driving, but I will completely fall asleep at work for instance, if its a slow day and I'm just staring at the screen. I am 35, just got married 2 years ago and have a 1 year old baby girl which prompted me to get checked out by the Dr. I have had this disorder my whole life but never did anything about it since I was single with no kids; I would just nap whenever I wanted, which was ALOT. I remember when I was 18 and in Marine Corps boot camp (yes, I served a successful 4 years with this disorder somehow, lol), I would get in trouble repeatedly for falling asleep in any classes we had. I would try to stay awake as hard as I could then the next thing I know one of my squad leaders is smacking me in the back of the head!So I did sleep study about 10 months ago and passed with flying colors! I slept for the entire 8 available hours at night, then fell asleep within 3 minutes for each nap they told me to take. I was proscribed Provigil, which is a named brand and took a bit of work to get my insurance to cover it. Even with the coverage it still costs me $60 a month as my share of the payment. But it is SOOO worth it! Life is so much different and better now! The only thing it did was take away the urge to nap during the day. No other side effect that I can tell at all. If I get 8+ hours of sleep at night and take my Provigil in the morning, I will just stay normal all day without that driving need to sleep. I still can take a nap if I choose to (which I LOVE to sleep, so thats good), but I just don't feel that crushing need to sleep anymore! Its really an amazing thing to go through 34+ years like this and then not have to feel like that again, hopefully you can talk to your Dr about this drug and give it a try.As for the blackouts, I don't think that has to do with a sleep disorder. This sounds a bit like what my wife went through during pregnancy and it ended up being a iron deficiency. So there is probably another issue that is causing that weakness or blackouts.Good luck!
    RCWatson 4 Replies
    • September 20, 2009
    • 11:36 PM
    • 0
    Flag this Response
  • See the following website: http://emedicine.medscape.com/article/291699-overview, and see the symptoms for Subgroup I. Maybe your fainting was related to your idiopathic hypersomnia (see orthostatic hypotension).I was diagnosed with idiopathic hypersomnia in 1998 (after several incorrect diagnoses). My symptoms started when I was a teenager. I also have extremely realistic dreams, to the point where I feel like I don't get enough rest when I sleep because I'm so busy doing whatever I'm dreaming about in my dreams. From what I've read about Klein Levins, it doesn't sound like that's what you have. I recommend that you tell your doctor EVERYTHING--even if you think it isn't relevant, it may turn out to be. Good luck!Hi. I am a 22 yr old female and have serious issues with my sleep. I am always sleepy! I sleep great at night and great during the day! I fall alseep at the wheel and just sitting around. If I start to just zone out I fall asleep. It is not that serious to be narcolepsy. I did go and get a sleep study and nap study done and they decided idiopatic hypersomnia. I think it may be a bit different. I just got the results of that today and decided to search the net a bit about it. I came across some other conditions such as Klein-Levins. I just wonder? I didn't tell my doctor because I didn't think the relavance but I have a scar on my forehead from passing out at work. I just blacked out. The doctors then said there was no cause and that it was just that. I tend to also get really dizzy and feel that blacking out effect in the shower so i just sit down or lay down in there. But with Klein-levins they talk about complusive eating, which i don't think i have. I do eat quite a bit for my size. I am 5'3 about 130 and I keep up with my husband 5'7 160ish. But that isn't that weird i know plenty of ppl that do that! I have really REALISTIC dreams. So real that i have to ask my husband if it really happened?? I just wonder if any of you wonderful people have any suggestions on what might be going on? Thanks a ton!
    Anonymous 42789 Replies
    • December 19, 2009
    • 08:17 PM
    • 0
    Flag this Response
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